Bladder Exstrophy Program | Patient Resources

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Contact the Bladder Exstrophy Program

  • 1-617-355-7796

Bladder Exstrophy Support Group

The Department of Urology at Boston Children's Hospital has pioneered efforts in the support and psychosocial development of patients with bladder exstrophy. Founded at Boston Children's in 1992, our group serves as a place for families to learn and receive emotional support. It also gives parents and their children a place to meet others who have shared similar experiences.

The support group meets two times a year on a Saturday and is free to families. While adults are participating in the support group, children or siblings have an option to participate in scheduled activities in a nearby room.

We provide education and in-person interaction:

  • parent-to-parent networking
  • guest speakers
  • teen chats
  • medical play for younger children

Recent support group topics:

  • complete primary care of exstrophy
  • clinical guidelines for care
  • development of the Exstrophy Clinic
  • urodynamics
  • bladder neck reconstruction
  • strategies for helping children to cope with bladder exstrophy

For more information on the support group, contact us at 617-355-7796 to speak with a nurse or coordinator.

If you are unable to attend an in-person group and are looking to connect with others in our community, we can connect you with volunteer families whose children are living with bladder exstrophy to discuss the challenges associated with the condition including:

  • incontinence
  • catheterization
  • reflux
  • ongoing reconstructive surgery, especially in adolescence
  • infertility

Patient booklet

Our in-depth booklet includes helpful information for every stage of a bladder exstrophy diagnosis from birth to teenage years.

National Resources

Massachusetts and Regional Resources

Massachusetts Department of Public Health
Division for Children and Youth with Special Health Needs

Connecticut Department of Public Health
Children and Youth with Special Health Care Needs
Information Line to connect to appropriate state region

Maine Department of Health and Human Services
Division of Population Health/Children with Special Health Needs

New Hampshire Department of Health and Human Services
Special Medical Services

New York Department of Health
Children and Youth with Special Health Care Needs (CYSHCN) Program/Community, Family, and Minority Health/Special Health Care Needs
518-473-7016 or your local county health department

Vermont Department of Health
Children with Special Health Needs

*Please check your state public health department for resources should your family reside in other regions of the country or world

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337